Disability hate crime motivation survey

Over the last few years many disability hate crime campaigners have called for perpetrator analysis. I am one of those: I have been advocating for it since 2008, when I wrote the disability hate crime report, Getting Away With Murder, (for the UK Disabled People’s Council, Disability Now magazine and Scope). At the (British) Disability Hate Crime Network, run on email and Facebook, of which I am one of the co-ordinators, we believe that perpetrator analysis is important because without knowing more about why people commit this crime, it is very difficult to design programmes that prevent it from happening or dissuade offenders from committing similar crimes again in the future.  (I recommended it again in my book, Scapegoat: why we are failing disabled people, published by Portobello Books in 2011.)  The Equality and Human Rights Commission recommended it in its report, Hidden in Plain Sight, published in the same year. The government promised to carry it out – which we joint coordinators at the Disability Hate Crime Network welcomed.

But it hasn’t happened, much to the frustration of many working on disability hate crime. It has been promised, through the National Offender Management Service and the College of Policing, but as far as we have been told, has not yet been published, despite many requests to see the data.

Simon Green, a co-ordinator of the Disability Hate Crime Network and I were talking about motivation recently. He was talking about the crimes against him, and how it was clear what the motivation was. So we came up with the notion: if the analysis of offenders is not going to be published, why don’t we ask victims and survivors of disability hate crime whether they know why the crime against them was committed? Often people who have experienced this crime have very useful thoughts to feed into our knowledge of the crime – but at the moment, that knowledge is not being tapped.

We decided to do a short snapshot survey of people who have experienced disability hate crime to ask them this question and a few other questions that might throw light on the crime – such as location of the crime, gender, age of the attacker and so on. We hope the results may throw some light on disability hate crime and possibly lead to a longer and more detailed study, if there is funding available.

Please do complete the survey – but only if you are living in the UK and have experienced disability hate crime. We hope that the results will tell us more about motivation – the missing part of the jigsaw. In so doing, it may aid prevention of this crime in the future.

I would like to thank all the co-ordinators for helpful comments on the design of the short survey. All identifying details will of course remain anonymous; only non-identifying details will be shared and once analysed the data will be destroyed.

Please go to our Facebook page to do the survey:

Facebook.com/groups/disabilityhatecrimenetwork

 

 

 

 

 

 

 

 

 

Operation Traveller Vote – and No Place to Call Home

In 2013, when my book, No Place to Call Home: Inside the Real Lives of Gypsies and Travellers came out, I interviewed some elders from the community about the importance of taking part in elections and what they intended to do. Of course things have moved on since then and Operation Traveller Vote has grown far bigger than anyone could have anticipated. But I thought the extract might be interesting for people to read anyhow. Whatever you do, please vote…..

Extract from No Place to Call Home, Revival:

 

Religion is hugely important to many in the communities, but the struggles that Gypsies and Travellers are facing require not just spiritual answers, but political ones. For all its flaws, it seems as though the Pentecostal church will be the most likely source of political leadership in the coming years. ‘There will still be a community in one hundred years’ time, but they won’t speak much Romani, and many of them will be living in houses, with

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a Romani Bible they can’t read. The music and songs will go on,’ Donald Kenrick, the Romani scholar said. ‘Many of them will be Pentecostals.’14 Could a Martin Luther King arise out of this new church, and harness together the cords of political and religious strength? For other passions are stirring at the grass roots of the community, and though they have links to Light and Life, these passions are directed at a very different agenda.

Just a handful of English Gypsies and Irish Travellers have made it into political life in the UK over the past forty years. These include the late Charlie Smith, who was elected a Labour council- lor in the 1990s and went on to become mayor of Castle Point in 2003; a year later, he was the only English Gypsy named to sit on the Equality and Human Rights Commission. Candy Sheridan too, had twice been elected a councillor for the Liberal Democrats in North Norfolk, but stepped down just before the 2010 election. A number of organisations were becoming increasingly vocal, as well, with well-respected spokespeople, such as Candy and Joe Jones at the Gypsy Council, Siobhan Spencer at the Derbyshire Gypsy Liaison Group, Helen Jones at Leeds GATE and Yvonne McNamara at the Irish Traveller Movement. Some young people, including Blue Jones and Nadi Foy, were standing up to articulate the voice of the community.

They had allies, of course, including many of the activists from Camp Constant, who had since formed the Travellers Solidarity Network and launched the ‘Fight for Sites’ initiative. Some in the communities had welcomed this support, but just as many felt that this outside intervention would only worsen their situ- ation. In October 2012, for the one-year anniversary of the Dale Farm clearance, the activists had staged a demonstration outside the Department of Communities and Local Government. Most of the Dale Farm residents were by now sick of the media coverage, and some said they were tired of the connection with the activ- ists and felt it was not useful to their cause. In the end, although the Travellers Solidarity Network sent a minibus to Dale Farm to collect residents living roadside, only three women had come out – and all three turned pale and shocked when some of the

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activists allowed the demonstration to become physical, and police began arresting people. The network remains active, and many in it are genuinely committed to greater equality for the com- munity. However, whether the network will ever be trusted by a critical mass in this very disparate grouping of peoples, bound by strong family and historical ties that are difficult to penetrate and understand, remains to be seen.

Billy Welch, for his part, wants to build on the enthusiasm from within the Gypsy and Traveller community – particularly in his hometown of Darlington. At least eleven per cent, and up to fifteen per cent, of Darlington’s population self-declare as Gypsies or Travellers. The real figure may be higher, nearer to a third, as many have moved to houses in town and may not identify them- selves for fear of harassment. Nearby Doncaster and York also have significant populations of Romani Gypsies and Travellers. This is where Billy said he intends to start his initiative, in the next round of local elections.

‘We have gathered together influential people in the Gypsy and Traveller community, the shera rom, and the big men from the Irish Traveller community,’ he explained. They had recruited, for instance, ‘Big Dan’ Rooney, a one-time bare-knuckle boxer who was now a prominent preacher with Light and Life, as well as the Irish Traveller Alexander J. Thompson. Billy’s cousins, Davey Jones and Jackie Boyd from the Light and Life church were part of the conversation too. ‘We are all talking to each other about what needs to change,’ Billy said. ‘We have all these Gypsy and Traveller organisations, around 120 all around the country, and yet they aren’t run by people like us, the elders. The government loves a “yes man”, so they have built up a white man’s structure. We are going to change all that.’ His big dream is that his people do it for themselves by being less secretive and engaging more with settled society. He wants to launch an Obama-style ‘Yes, We Can’ political campaign among his people, starting with getting people to the polls. ‘We need a voice,’ he says, ‘So we need to vote.’

Billy estimated that close to a million people in the UK could claim some Gypsy or Traveller origin – a potential electorate

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that he said was all but ignored. Even if the figure were nearer to the official estimate of some 300,000, if the community voted together, this number could tip seats to preferred candidates in some areas. ‘Eighty per cent of our people live in houses now, and they don’t put that they are Gypsy on the census. We think the gorgers [settled people] can do what they want with their world; we live in our own world. My people aren’t interested, but they will have to be, the world isn’t the same place it was fifteen years ago. They are smothering us with laws and restrictions. We’ve got no voice in Parliament. When the authorities come down on us, I want my people to vote; I want the government to know how many of us there are. When there is a tight election, we could be the difference to someone getting kicked out. That is the only way we will get treated as equals, have some value in society. We need to register to vote. We are going to have to get involved in their world as well.’

He decided to launch his voter drive at the Appleby Fair in June 2013. Twenty people, some from the Light and Life church and others from clans from around the country, would distribute leaflets and talk to people as they wandered the fair grounds. ‘I’m the shera rom of my tribe, and I’m talking to the heads of all the other families. Some of them cover big areas, some small, but they are all influential. The communities will listen to us. We will decide which party is the best for us and this will be a collective decision. In some areas, with around one million of us, we can swing a vote; round here we can definitely swing it.’ He had heard from families in Scotland and Wales who supported his political campaigning as well.

Billy was motivated to become politically engaged by an expe- rience some twenty years before. He was on his way home from a business trip to Germany, and was set upon by a National Front gang. He was beaten so badly that his family didn’t recognise him when they visited him in hospital. Yet no action had been taken against the perpetrators of the attack. Then, in 2011, his outrage was renewed when he was barred from his local pub on the grounds that he was a Gypsy. Billy fought that case with the

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aid of the Equality and Human Rights Commission, but he was aware that, up and down the country, Gypsies and Travellers were being targeted for their ethnicity and routinely refused access to hotels, restaurants, pubs and clubs. He wanted to change that – make a stand, not just for himself, but for the community.

The attitude of Gypsies and Travellers needed to change, he explained. ‘Our people have had a very coloured view of author- ity. The wider world has been out there and we have lived in our little world and thought, What they do doesn’t concern us, that nothing that we would ever do would influence anything in the community, so we have just got on with our life. But things have changed. A lot has happened in the wider world. It’s about time we started taking charge of our own destiny, started to influence. If we don’t vote, we will never improve the situation,’ he said.

‘We live in a democracy and we don’t use it. Because we don’t vote, we don’t have a value. Until we become worth something in electoral terms, to both local government and national govern- ment, they will continue to privilege the settled community over us. We are our own worst enemy, and that needs to change.’ Other groups were also planning to help – Simon Woolley, Director of Operation Black Vote, fresh from working on the Obama re-election campaign, had offered advice. The Gypsy Council was helping to register the residents roadside at Dale Farm too – in an auda- cious plan to vote in Len Gridley onto Basildon Council in 2014, to question the eviction and the money spent.

Buy No Place in any good bookshop, or online at Amazon: http://www.amazon.co.uk/No-Place-Call-Home-Travellers/dp/1851689494

Guest blog by Anne Novis – vulnerability and disability hate crime

A guest blog here by my friend, and colleague on the Disability Hate Crime Network, where we both serve as pro bono co-ordinators, on vulnerability and disability hate crime. Anne has huge experience of navigating the criminal justice system as an expert. She serves as an advisor to the Metropolitan Police on disability hate crime.

 

GUEST BLOG

Vulnerability and Disability Hate Crime  

To be or not to be a vulnerable person?

By Anne Novis MBE

I am vulnerable.

This is what the law says as I am a disabled person, a wheelchair user and a person who receives care support.

Yet I do not feel I am and I do not feel that treating me as such does justice to who I am as a person or what I experience around hate crime. It certainly does not enable justice through the police or courts.

I could go on about my feelings on this, how disempowering it feels, how such a label does not in any way ensure I get the responses I should get when experiencing hostility due to being a disabled person. Suffice to say it’s not a description I find acceptable to be labelled.

I, like all of you reading this, can be in vulnerable situations, where someone decides for whatever reason to target us for a crime. They will usually assess their own risk first for any type of crime against anyone. It’s normal. Yet for some reason around disability justice agencies think it becomes an acceptable ‘reason’ in its own right for doing the crime,  a reason that then puts the onus on the disabled person rather then the perpetrator.

Yet if someone targets me because I am a vulnerable person is that not hate crime? In my opinion it is if the act is directly about me being a disabled person.

Yet statutory agencies find it hard to get their heads around this, they think that if a vulnerable person, or adult at risk, is targeted it’s due to no more then that, being ‘vulnerable’. To me whatever term or word is used if someone targets me for that reason then I perceive that as a hate crime or incident.

Lets look at this another way, if I dress differently, say as a Goth and I am verbally abused due to my perceived difference, is that hate crime? Some say yes, it is being recognised as a type of hate crime. If I am from a culture, race, religion or have a sexuality that’s perceived as somewhat different from what others may perceive as the norm and then targeted due to that perceived difference then that too is recognised easily as hate crime. Yet for disabled people if we are deemed as ‘vulnerable’ or ‘adults at risk’, and often we are, and targeted for a crime it’s not automatically understood as hate crime.

Why not I have to ask?

Yes it is easier for criminals to target some disabled people because we may be perceived as ‘less able’ an ‘easy target’ or ‘easily misled’.

But what is behind such crime? What is motivating the offence, what language, behaviour, or prejudice?

Is it for the victim to just accept they are ‘vulnerable’ or an ‘adult at risk’ and therefore change the way they live?

A focus on perceived vulnerability when addressing hostility against disabled people is a distraction from what is really occurring.

Looking at why a perpetrator decides to target a disabled person, the context, timing, language is necessary but at the end of the day they have targeted a disabled person for a crime and therefore automatically a presumption that this is more then likely a hate crime needs to be the first thought when recorded and investigated.

In the CPS guidance on hostility and vulnerability it states: ‘It can be simpler, more intuitive, to proceed on the basis of vulnerability but an inappropriate focus on vulnerability risks enhancing an already negative image of disabled people as inherently “weak”, “easy targets” and “dependent” requiring society’s protection. Instead, the focus ought to be on enforcing the victim’s right to justice and scrutinising the offender’s behaviour, prejudices and hostility so that the case is properly investigated and prosecuted for what it is.’

Yet how many police officers read this guidance, have any understanding of the types of hostility disabled people experience?

Very few, for the focus is on ‘vulnerability’ rather then Hate Crime, ‘Safeguarding’ rather then prosecution and justice.

Another example is bullying, many of us can be bullied as children in the playground at school, and there are extensive actions in place to address this now.

Yet when a disabled person, an adult, is bullied many think this is just a fact of life, even the disabled person due to the lack of appropriate responses they get when reporting it.

I was told once by a police officer when reporting that I had been verbally abused as a disabled person “What do you expect? You just have to ignore it and toughen up”. A comment I recall from school days.

Yet as adults is it ever acceptable to bully another adult? I think not and again this is a type of hostility against disabled people that needs recognition as disability hate crime for you only have to read a couple of case studies to understand how easily ‘bullying’ can lead to violence, torture or murder of a disabled person.

As victims we are already changing the way we live, some isolate themselves, never go out alone, and are anxious and fearful, find ways to hide themselves from the notice of others for fear of what abuse they may experience. I know because I do this myself at times and hear it from so many disabled people. Focusing on us as ‘vulnerable’ adds another burden upon us, for no matter what I, or others may do, this perception will be a barrier between us and justice.

It frustrates me immensely that in my work advising justice agencies again and again the issue of ‘vulnerability’ becomes a stumbling block in the work on Disability hate crime. Yet another hurdle to be overcome before we as disabled people can rightly get the justice we deserve as fellow human beings.

It is the perpetrators action and behaviour against disabled people that needs more focused attention by police and the courts. Protection comes when we are assured of appropriate policing and justice, they go together, but never should the focus just be on protection, or safeguarding, for we need the police to investigate and understand that just as in other types of hate crime we are being targeted due to being disabled people.

So I am not a ‘vulnerable’ person, I am a human being who has a right to expect police and justice agencies to address my experiences as I perceive them and to also recognise what is really happening rather then accepting hostility against disabled people as something that cannot be changed because being a ‘vulnerable person’ means its to be expected, as though I am somehow at fault, inherently and automatically a lesser being, one who needs ‘protecting’ rather then justice.

The CPS guidance explains it as do I:

‘When the nature of a person’s disability makes it easier for the offender to commit a particular offence, police and prosecutors often focus on the victim being “vulnerable”, an “easy target” and no further thought is given to the issue of hostility.

This approach is wrong.’ (my emphasis)

Then goes onto to explain:

Targeting a particular person to be the victim of an offence, because they are black or gay or disabled is often, but not always, a clear indication of hostility (unfriendliness, ill-will etc) based on race, sexual orientation or disability. Seeing the particular disabled person as an easy target for a particular criminal offence, does not alter this. The victim is still being targeted specificallybecause of their disability.

And;

‘Prosecutors must therefore explore fully the surrounding context of an offence committed against a disabled person, so that the true nature of the offence can be put before the court. There will be cases in which there is no other reasonable explanation, other than that the offender’s hostility was based on disability. This is particularly so in cases of abuse, violence or other offensive conduct as these offences tend to carry inbuilt within them the demonstration of hostility. For that hostility to be based on disability is but a short evidential step in many cases.

In other cases the question may be asked: what other explanation can there be? Let the defendant give his explanation and let the court decide. Courts are entitled to draw a reasonable inference that hostility based on disability was the whole or partial motivating factor.’

This guidance was produced in consultation with disabled people, we have yet to see it make much difference to the way police respond on the ground ensuring they record, flag, investigate fully so a prosecution could take place. We need to ensure it does make a difference by challenging the perception around perceived vulnerability.

Reference

CPS Guidance on Prosecuting Disability Hate Crime –

Hostility, Vulnerability sections

http://www.cps.gov.uk/legal/d_to_g/disability_hate_crime/#a31

 

Romani and Traveller music – extract from No Place to Call Home

It was great to hear Sam Lee talk about his project, collecting songs from Irish Travellers and the Romani people, on Radio 4 this week. This is such important work, and Sam’s been patiently doing it for some years now. Romani and Traveller singers have kept the flame of our common folk music alive, for many decades, if not centuries. We all owe them so much. Here’s an extract from my 2013 book, No Place to Call Home, where I write about Romani, Roma and Traveller music and its importance, with an interview with Sam. The chapter, Revival, also looks at literature (poetry being something else and well worth following at the moment as well), religion and art generally.

Romani and Traveller music – extract from Revival, Chapter 14
No Place to Call Home: Inside the Real Lives of Gypsies and Travellers
Katharine Quarmby (Oneworld, 2013)

PLEASE APPLY TO THE PUBLISHERS IF YOU WOULD LIKE TO REPRODUCE – NO REPRODUCTION WITHOUT PERMISSION. UNDER COPYRIGHT.

Identity was also in the mind of the Scottish singer-songwriter Ewan MacColl, whose ballad ‘The Travelling People’ has become almost an anthem. Without Gypsies and Travellers, MacColl argued, the traditional folk music of Britain and Ireland could have died out. These communities passed the old lyrics and music down, generation after generation, for centuries. In his day, MacColl had patiently collected field recordings of both songs and speech in Gypsy and Traveller encampments. Other singers, including June Tabor, soon followed his lead, as well as people from the communi- ties themselves, such as Sheila Stewart, Thomas McCarthy and the Orchard family. Now, some twenty-five years after MacColl’s death, such cultural preservation work is being honoured and valued. The young musician Sam Lee was nominated for the Mercury Prize in 2012 for his debut album, A Ground of its Own, featuring songs collected from Gypsies and Travellers. Though not a Gypsy or Traveller himself, Lee had trained for four years under the legendary ballad singer Stanley Robertson, a Scottish Traveller.
The resurgence of interest in so-called folk music is not a peculiarly English phenomenon. New bands with Roma roots have formed across Europe, including the Romanian Gypsy bands Taraf de Haidouks and Fanfare Ciocarlia and the Macedonian brass band Kocani Orkestar. The annual Guca Brass Band Festival in Serbia hosts many up and coming Roma bands who perform in the traditional style, but there are also new fusion groups combining Gypsy and Traveller sounds with rap, punk and jazz, including Jewish klezmer. Night clubs play records by the Shukar Collective, Besh o droM and Balkan Beat Box – including a special Nuit Tsigane (‘Gypsy Night’) in hot spots such as Le Divan du Monde in Paris. Often, at Appleby and Stow, the young Gypsy men driving cars rather than ponies are listening to this rap or punk-inflected music out of Eastern Europe.
Sam Lee, however, has been more focused on the traditional string music beloved by the older members of the travelling com- munity – songs like ‘On Yonder Ill’ and ‘Goodbye, My Darling’ – that he had collected from all over England, Scotland and Ireland. Many of the songs touch on matters of love and separation – but also tell of a steely will to survive. As a young Jewish man from North London, he had been inspired to collect these songs in large part because of learning about the treatment of Gypsies and Travellers in Britain. ‘Many are the indigenous people of this country – although Gypsies are not originally from here, the Irish and Scotch Travellers are pre-Celtic, as old a community as you will ever get in Britain. But the treatment they have had was very [similar to] what happened to Native peoples in other places. For instance, in 1968, when sites were opened up here, that was the same year that the Canadian government forcibly settled the Canadian peoples, such as the Inuit … So there is that amazing time contiguity. There is also the nature of the lifestyle of the older Gypsies. Many were born in tents, and so many have lived outdoors, and because of that, they have this amazing affinity with the outside. To have that regularly enforced on such a deeply ancestral level, is quite a … nature–man relationship that many tribal peoples have.’
Lee had begun by patiently knocking on doors on sites where he didn’t know anybody. Mostly he’d had been welcomed, albeit with some caution, and as families got to know him, he experi- enced great warmth and hospitality. The fact that he was Jewish – ‘another wandering tribe’, as he termed it – seemed to help. During his apprenticeship under Robertson, his role was ‘keeper of songs’. Most folk singers raid the archives of field recordings gathered by other musicians, most notably those housed in Camden’s Cecil Sharp House, considered the home of English folk music. But Sam wanted to hear it from the Romani people themselves – they were not dead, just because their songs had been collected. He said that simple fact came as a surprise to some in the folk scene. ‘None of them believed there were any singers out there; they thought it was dead. They didn’t know about Gypsy culture; they thought that the precious oral tradition was dead, but actually it’s still there. I have recorded songs from fell-pack huntsman, farmers, not just Gypsies – music is alive everywhere. The folk music world just wants its safe world on Radio 2 … It likes soft, fluffy, comfortable stuff. I have brought loads of Gypsy families down to Cecil Sharp House and it’s terrifying for them. They sit down in the library and sing these ballads that they have no idea are hundreds of years old. And some people say, “Wow, it’s lovely,” but they have no idea what to do. It’s like bringing the dinosaur into the Natural History Museum and saying, “Hey, watch it dance,” and they say they only know about bones.’
He went on: ‘Mahler said, “Tradition is tending the flame, not worshipping the ashes,” and I think there is a huge amount of ash-worshipping in the folk world … Nobody is putting much effort into keeping the flame alight, and we mustn’t let it die.’

FROM: NO PLACE TO CALL HOME: http://www.amazon.co.uk/No-Place-Call-Home-Travellers/dp/1851689494/ref=asap_bc?ie=UTF8

Also available, as a Newsweek Europe e-book about the rise of Evangelical Christianity amongst Europe’s Romanies: http://www.amazon.co.uk/Romani-Pilgrims-Europes-moral-force-ebook/dp/B00O9EZVCK/ref=asap_bc?ie=UTF8

NO REPRODUCTION WITHOUT PERMISSION FROM THE PUBLISHERS. UNDER COPYRIGHT.

Disability, co-production, journalism and ‘nothing about us without us’

A few months ago Mosaic Science magazine, which is published by the Wellcome Trust, asked me to look at sexuality and disability – how, in essence, disabled peoples’ access to intimacy is sometimes hindered, sometimes forbidden and sometimes mocked. I feel really grateful that I worked on this project – but it couldn’t have been done in the way I wanted it to be done without the help and support of disabled friends and allies, and also a shift in the way in which I do my own journalism. This has changed over the last seven to eight years, as I have come to understand the concept of ‘co-production’ and the resonance of ‘nothing about us without us’. Defining those terms, loosely – as co-production relates to journalism, it means that journalists keep open lines of communication with (in this case disabled people, but it could mean, say, Romani people, or any other marginalised group that often doesn’t get fairly represented in the media). Disabled people offer feedback on the work as well. It’s a two-way process, and I think that journalism is often improved in the process, without, of course, endangering the principle of free speech. “Nothing about us without us” was coined by disability activists during the struggle for civil rights but has since been used by other groups – and, again, for the media, is a useful concept. If you are writing about a group – particularly one that is marginalised and discriminated against – it’s vital that you involve the community in the process.

But first, a bit about me…and where I fit in to the narrative.

I rarely write about my own experiences of pain and impairment (I never write about those in my own family in any detail, because they are not my own), but recently I have written a bit more about my long-term neurological condition, relatively severe and chronic migraines, as I realise, more and more, that it has affected how I live my life, constrained either by pain, or the management of it. I first had a migraine when I was 12 or 13, and was entering puberty. Being adopted, nobody else in my family had any experience of migraines and my mum thought I had a headache. I was in so much pain that I actually wrote her a farewell letter that night – I thought I was going to die from the pain in my head. She really wasn’t to know – it was only later, reading the account of migraineurs, collected by the great Oliver Sacks, where he recounts tales of migraineurs who felt as if their head would split open that I realised that this was a common, if unpleasant experience. It’s now relatively well managed with epilepsy medication (odd, but true) and I’m looking forward to the menopause with excitement (I know that sounds a bit weird) as many women report that their migraines cease after the menopause.

Migraine is my first ‘black cat’ (I’m not so much of a dog person). Melancholy is my second – perhaps, again, linked back to that childhood experience of being adopted. When I finally found my Iranian birth father, decades after searching for him, and saw that broad, generous smile on his face, something lifted – a childhood and early adult melancholy (you can call it depression if you want) that I had lived with for so many years. It comes back sometimes and my family laugh and say it’s linked to the Iranian, poetic, over-dramatic side of me. That may be true.

I don’t mind my two black cats – I’ve lived with them for so long that we are really quite comfortable with each other. We’ve settled into a rhythm with each other, and they have shaped my existence. I wonder, sometimes – who would I be – who will I be – if the migraines do leave, after menopause? I am accustomed to never going anywhere without medication, avoiding bright lights and loud noises. Those habits have shaped my identity, so what happens when I don’t need them any more?

So when I write about impairment, and long -term conditions, I hope it is with some knowledge and empathy with my fellow-travellers. I think I haven’t written about it much because my own life is OK  – as I said, I have gotten used to my own black cats. But I do believe that you should always involve those who are party to a story in the making of the story, as much as possible. And you should build capacity – so often, when I write on a subject touching a particular community, I ask to write something (or make a film) with someone from the community, rather than just work alone. The next time around, I might not be necessary at all. Co-production takes time – it should mean working with people, discussing and wrestling with ideas, being challenged and then getting somewhere new with the piece of work. It’s still your work but it’s somehow shaped by those who are part of that story, in a much more authentic way.

To end, I think that the phrase: “Nothing about us without us” should be carved on the heart of every good journalist. It makes good business sense – fewer complaints – if you want to see it in those terms. But, more importantly, it’s just the right thing to do.

 

Treasure Island, Jabberwocky and The Day After (They Went Off on One): three shows in a week

Like most Londoners, I suspect, I don’t actually get to the theatre that often but this week was unusual. I saw three performances, ranging from Treasure Island at the National Theatre, Jabberwocky at the Little Angel Puppet Theatre in Islington and, last night, The Day After (They Went Off On One).

The first was for a family celebration, so we had with us family members ranging from nearly 80 down to 12, with a professional musician along for company. I was a bit nervous about the show. The reviews have been a little mixed although most have been positive, and I thought it might fall between two stools for the family – my parents might find it unfaithful to the book and dismiss it, and my teen and pre-teen find it childish. The muso might hate the music. Everyone, luckily, found it entrancing, particularly the extraordinary set design, cross-gender acting, the sea shanties by John Tams and other music by Dan Jones, and the adaptation of the book that lifted it through history and kept it alive for young people today. Without giving too much away, when the staging revealed glittering tunnels at one point, my teenage daughter gave us a thumbs-up. High praise indeed.

Next evening I went along to catch Jabberwocky, on one of its last nights before it finishes up at Little Angel. I should say that I’m linked to Little Angel – they have developed one of my picture books, Fussy Freya and the Fabulous Feast, through the Hatch programme and my book, Rosie gets the Plot has been on a limited schools tour with them, two years running. I’m a big fan of puppetry (not just in the UK, having visited puppeteers working in Iran). I wanted to see how Little Angel had revived its successful 2004 production of Jabberwocky, directed by Steven Tiplady, who returns for this production.  

If you can catch this frightening, surreal, fantastical show, in its last couple of performances before it ends, do. The director uses all the staging possible at the Little Angel – the famous marionette bridge, giving the impression of flying puppetry, rod puppetry, table-top work and even some big screen projection at the end, reminding me of the Little Angel production of The Tempest in tone. The music, by Hannah Marshall and Ben Glasstone is good, but the big bow goes to the four puppetteers: Mandy Travis, Stan Middleton, Sarah Wright and Nele De Craecker, at the height of their craft. My only caveat would be that in a show with so few words, ten minutes could, perhaps, have been shaved off in the middle. But it’s a magical experience, and the audience clearly loved it.

And thence to yesterday: a bleak, but authentic snapshot of the lives of two young Londoners, The Day After (They Went Off On One), written by award-winning young playwright Miran Hadzic. ‘He’ is unemployed, and hoping for that one phone call from a company that will take him one, rather than the hundred rejection letters he receives. ‘She’ is working in an office job and losing all hope. They meet, come together for one night, but then what? I went to this with an old university friend and her mother. Afterwards, we were talking about the sense of anomie, or social breakdown in the play, and how bleak it was, but agreed it was true enough, now. If there are two groups of people who have lost out in the last ten years, economically, it is young people and disabled people. Young people, the people I and my friend once were, don’t have the life chance we had when we left college. The city that welcomed us with at least half-open arms, where we found work, made bonds, must seem a harsh place to live – so harsh that some young Londoners feel pushed towards some very stark choices. If you can see Hadzic’s two-hander, ably acted by Ruby Thompson and Todd James, directed by Juliet Knight, produced by Caroline David, do go. The Vault, where it’s put on, is worth a visit in itself.

All three of these plays I watched this week, I reflected, looking back, have central characters, essentially mired in poverty and loneliness, attempting to find a way through and out through force of will. Jim Hawkins, in Treasure Island, has a crew, granted, but is isolated because of his age and the loss of his father (not present in this version). The youth in Jabberwocky sets out, alone, on his perilous quest to slay the beast and return with its head – although of course it is all wrapped around in nonsense, and is a story within a story. In The Day After (They Went Off On One) London and the economic conditions it imposes on its young citizens has pushed the two young characters to the edge of despair. Can they find something within themselves that resists?

My week of theatre has been a fascinating one – and not expensive either (important!). We booked the National tickets early, and many of them were therefore relatively cheap – around £20 for good seats. The Little Angel runs a scheme for tickets on Wednesdays called £5 at 5pm. And the ticket for the Vault festival was under £10 – so although London theatre can be very expensive, it wasn’t this time around. Fringe, mainstream and independent – all in one week. London theatre appears to be diverse, interesting and in good health. Looking forward to being a very small part of it, if my play goes on school tour this year.

Remembering the Holocaust – and the disabled victims who died in the T4 programme

In this extract from my book, Scapegoat: why we are failing disabled people (Portobello, 2011), on Holocaust Memorial Day, I am sharing my analysis of how the T4 Nazi killing machine was inspired by eugenics enthusiasts in the UK and the US. It’s a grim read, I’m afraid, but important to remember why so many people died. Never again.

Extract from: Scapegoat: why we are failing disabled people (Portobello, 2011)

by Katharine Quarmby

The legitimisation of eugenic views through Europe and American ended in a logical, if horrifying outcome: the systematic murder of thousands of disabled people in Germany, after the Nazis came to power in 1933. The National Socialist Party wanted to create a pure Aryan nation, and eradicate the taint of the Jewish people (as well as homosexuals and gypsies) But a lesser known part of their moral thought was that “degenerate”, impaired Aryans should also be eliminated. In some ways what happened to Jewish people was a tragedy foretold in the slaughter of innocent disabled children and adults, used to perfect the killing technology that was then practised on the Jews. Racial hygiene, as Hitler called it, started with the social cleansing of disabled people.

The artist, Liz Crow, has spent the last two years investigating the process that lead up to what was known as the T4 killing programme, for her art installation, Resistance. She has identified a systematic “softening up” of the population so that they would be prepared for the programme.

One part of that campaign was to open asylums to the public (as in the Victorian freak-shows), to promote the racial hygiene laws. Thousands visited in the mid 1930’s, including many members of the SS. Each tour, Liz Crow says, “culminated in a lecture illustrating, via the inmates, symptoms and the necessity for eugenic measures.”

Another strand of the campaign was through film and posters, stressing the cost of disability (similar to the less systematic, but no less brutal campaign in the US). One example she has found, from a sequence in a Reich propaganda ministry film, shows disabled people lying in cot beds, with the strap line: “Life only is a burden”. Another, which combines the Nazi attitude towards minority ethnic groups and disabled people, is of a film of a black man holding out a begging bowl, with the strap-line: “Mentally ill negro English, sixteen years in an institute costing 35,000 Reich marks.” As Liz Crow comments: “what happened to this (disabled) community served as a prototype for everything that came later….Had people intervened at that point, presumably, what came next would have been, in some way, different…disabled people were the guinea pigs for the next phase.”

The first law that the Nazis passed on coming to power was the Law for the Prevention of Genetically Diseased Offspring, instituted on July 14, 1933. Those with deafness, schizophrenia and other “malformations”, such as learning difficulties were prevented from breeding by sterilisation. The law was based on the laws functioning in Chicago, drafted by Henry Laughlin. Indeed, there was much admiration in 1936 of Nazi doctors for American eugenicists – even awarding one an honorary doctorate.

Hitler and other leading Nazis were also much influenced by Sparta, where he admired “’the exposure of sick, weak deformed children, in short their destruction, was more decent and in truth a thousand times more humane than the wretched insanity of our day which seeks to preserve the most pathological subjects.” Nazi propaganda against disabled people increased, labelling them “unworthy of life”, “useless eaters” and highlighting their burden on society in print and films. Hitler’s Strength through joy campaign prioritised getting rid of the “syphilitics, consumptives, hereditary degenerates, cripples and cretins”. He wrote in Mein Kampf that “the lame and the defective are a scourge on humanity”.

The decision to eradicate disabled children started with Gerhard Kretschmar, and accelerated shortly afterwards, apparently when other families with disabled offspring also petitioned Hitler for permission to kill their children (although some German writers were advocating this solution as early as 1920). It is estimated that at least 5000 children, from newborn babies up to juveniles, were murdered. Some were starved, others gassed.

In July 1939 planning of the T4 programme (so-called after the street address in Berlin where it was co-ordinated) of mercy killings began. An experimental gassing procedure was carried out in the winter of 1939, and the Reichs-Committee for the Processing of Serious Genetic Diseases was also formed that year, collecting data on infants and ‘deformed newborns”. German doctors took part voluntarily in the programme, and the earlier, related programme of sterilisation. The German paediatrician, Hartmut Hanauske-Abel, who has examined many of the official documents relating to both programmes, suggests that they did so because they were convinced of the rectitude of eugenics, the programme was profitable for them and it released corpses for medical experimentation. (When he first published his findings in the Lancet in 1986, he was suspended from practising as a doctor in Germany. He later won an appeal against his suspension. )

He writes about the programme thus: “The practical experience obtained in the killing hospitals of T4 provides the core for the annihilation technology of the death camps, often implemented by the same technical and medical personnel.” He concludes: “Changes which today are interpreted as causing the downfall of the German medical community were at that time warmly welcomed by the widest segments of that highly educated biomedical and scientific elite.”

One nurse involved in the children’s killing programme, at the Hadamar facility, in northern Germany, one of the six institutions where disabled people were murdered, Chief Nurse Irmgard Huber, said at her trial in 1947: “The lives…are just as valuable as my life, but I couldn’t change anything there. I didn’t have any say. I couldn’t report anything. I avoided the matter.” Instead, she distributed sweets to the children before they went to the gas chamber.

No-one abroad seemed much interested – except other euthanasia enthusiasts.
In 1939, when Germany started to practice euthanasia against disabled children and adults, one officer in the American Eugenics Society commented it showed “great courage”. Indeed, it is estimated that by 1941 the numbers of those sterilised in the US had reached nearly 36,000. One doctor, Joseph Dejarnette, a doctor from the state of Virginia, commented that “the Germans are beating us at our own game.” In 1942 an article in the journal of the American Psychiatric Association called for the killing of all “retarded” children over five.

Hitler signed the order to start killing disabled adults on September 1, 1939, giving permission for those who were “incurable” to be “accorded a mercy death.”

Grey buses, with blacked-out windows, would arrive outside villages, local asylums and hospitals to take disabled people away. They were known to children as “the murder box” and mothers would frighten their children, saying that they would be taken away in them if they were naughty.

By the end of the war it is thought that around 200,000 disabled citizens had been murdered, among them the insane, the disabled, the tubercular and the retarded, as the Nazis called them.

The killing, one writer, Hugh Gregory Gallagher, commented, was methodical and scientific. “What was interesting and important about the killing program is not the mad-dog killers, but rather the careful, orderly and quite medical manner by which the full Germany medical and scientific establishment proceeded to kill its patients over a period of years.”

One witness recalled that when the killing first started, beds were made with fresh linen and warm blankets. When people arrived to be killed, they were given hot coffee and warm rolls. Of course we will never know whether this was genuine compassion for their fate, or a desire to make the killings easier to achieve. Soon, however, the numbers of those due for killing rose and the system became stressed. The Nazis started to reuse coffins (by designing them with a flap that opened in the bottom to allow the corpse to fall out) and started to dig mass graves, especially for children.

Some churchmen remonstrated. The Bishop of Limburg protested in 1941, writing to the minister of justice: ‘the citizens of Hadamar watch the smoke rise out of the chimney and are tortured with the every-present though of the poor sufferers’. Another, the bishop of Paderborn, said “among those unhappy beings who are destined to be killed or who have already been killed, there are many who aside from partial disturbances are mentally completely clear and who know what is going to happen to them.” However, one influential Catholic, Joseph Mayer, became an apologist for the Holocaust, writing: “moral law applies only to the mentally normal, rational individuals. Mental patients do not belong in the moral order, neither as subjects nor in terms of implementation.” Later he prepared a report saying that there were reputable moral arguments for and against sterilisation on both sides.

Before long, the regime was even killing World War One veterans and even shell-shocked veterans fresh from the Western front. However, this policy was short-lived, partly because it affected troop morale.

There were poignant scenes. In one village, Absberg, the villagers and abbess protested against disabled residents of the abbey being taken away in 1940. The abbess said a special mass for them, and one eye-witness reported: “They were seen as stirred up, like animals”, and refused to go. One woman said “I don’t want to go.” The people of the town gathered, and waved goodbye to their friends causing wide-scale disgust as the news spread. In another village, not far away, in Bruckberg, those who were about to die visited almost every house in town to say goodbye.

But the Absberg and Bruckberg protests, such as they were, did have an effect. The secret of the grey buses was secret no longer. The villagers of Absberg protested to their Bishop, Von Galen, who thundered from his pulpit that what was happening must stop. T4 was cancelled officially shortly afterwards, in August 1941. But unofficial killing continued thereafter – in what is known as the “wild phase” of the programme.

The banality and playfulness of the evil often perpetrated against disabled people, is best exemplified in what Hugh Gregory Gallagher claims happened when the staff of Hadamar were assembled, in the midsummer of 1941, to celebrate the 10,000 murder in the institution. The staff celebrated the anniversary with beer and wine, in the same room where the people had been put to death. The body of the murdered man was adorned with flowers and laid on a gurney, decorated with small Nazi flags. The hospital book-keeper, Mr Merkle, in the words of one witness, “turned his collar about, put his coat on backward, and intoned a burlesque eulogy of the deceased insane person.”

The physicians who participated in the euthanasia campaign have mostly never been successfully prosecuted. They did not stand trial at Nuremburg, unlike other Nazi mass murderers because their crimes had been, in the main, perpetrated against other German citizens, rather than foreigners. As a result, Professor William Seidelmann writes, “Absent from the dock were the leaders of the medical profession of the Third Reich, in particular the academic and scientific elite. It was this elite who legitimised the devaluation of human life and set the stage for medical crimes—crimes in which leading academics and scientists were either principals or accomplices.” There may have been another reason, too, for the paucity of trials. Liz Crow argues that the Nuremburg prosecutors were clear in their minds that what happened to the Roma, the Jews and other groups was abhorrent. “But they were confused about whether killing disabled people was a public service. The prevailing attitudes about disabled people, that they were inferior, pitiable and burdensome, defined their judgement.”

Back in the UK, the return of the war wounded did increase public sympathy for the physically disabled and those with shell-shock and other mental health conditions. Churchill, too, had mellowed. One of his last acts as a war-time Prime Minister was to commit the so-called “mental millions” to support those returning from war, with their nerves in shreds. One third of servicemen invalided out of the army had been discharged on mental heath grounds. Disabled people had gotten angry at last: veterans from both world wars lobbied for the right to work through organisations such as the National League for the Blind and Disabled, holding sit-ins to force government to ensure their right to employment.

The end of the war did achieve two things for disabled people – it confronted Britain and America with the ugly reflection of their own ideas in Nazi Germany – and it created more sympathy for some categories of disabled people – though not all within British society. The many disabled war veterans, in particular, normalised physical impairment for many. And the end of the war was also the beginning of the end for the institutions – but with numbers reaching a record 150,000 in 1950, it was to prove a very long journey.
As for Gerhard Kretschmar, his identity was concealed from us for over fifty years, known only as child K in official terminology. His short and miserable life was hidden in the Stasi files in East Germany, and only came to light when a German historian, Ulf Schmidt, unearthed it, after the fall of the Berlin Wall and wrote about him in his biography of Hitler’s physician, Karl Brandt. Gerhard’s murder was recorded, not as euthanasia, but as “heart failure”, like so many others. He, of course, like those victims of mercy killings today, did not consent to his death. Few know of Gerhard’s life, or death. If it had not been for Ulf Schmidt we would not even know his name. Many of the other victims of T4 remain nameless even now. Astonishingly, those responsible for murdering their “patients” could escape responsibility – by claiming that the patients they had killed had a right to medical confidentiality.
The last victim of T4, Liz Crow says, was a four year old disabled boy, Richard Jenne. “The American forces moved into Bavaria, the last area they liberated, and they put a protective ring around the local institution for disabled people, not knowing about T4. He was killed. Four weeks after peace was declared.”

Too many of the victims of T4 remain nameless. And naming the dead, and what was done to them, matters. I believe that Gerhard’s story, Richard’s story, and those of other disabled people murdered like them, should be known and taught in British schools. They were human beings, not beastly burdens who should be put out of their misery. We owe it to them to remember them, and to give them their rightful place in our common history. For if we do not learn from history, we cannot guarantee that it will not be repeated.